Neupro

[badnights]

I suspect Lyrica won't cover your symptoms while you withdraw from the DAs but it seems clear that you need to get off the DAs and onto something else. Perhaps you should hunt for a doctor who has more experience with refractory cases like yours. You want to try to mitigate the great grief of withdrawal and also avoid the even greater grief of continuing on with the DAs.

The link in my signature leads to two resources that might be useful to you: to Buchfuhrer's 2012 paper on managing WED/RLS gets into how to treat augmentation, and the extract from Clinical Management is good to have as well (you have already ordered the book).

[Orrel]

There seems to be a resistance to using opioids among the doctors where I live. Even my pharmacist
grimaced a bit when I talked to him about methadone etc. Perhaps I will have to
lean on my doctor if the going gets really rough. He seems to have lots of experience with WED.
Parkinsons and WED are his specialty. He is easy to talk to and explains things fully. I should ask
him why he is not keener on opioids.

[badnights]

It's worth asking, if he won't take it the wrong way. There's lots of evidence that opioids are remarkably effective in treating WED.

[ViewsAskew]

There seems to be a resistance to using opioids among the doctors where I live. Even my pharmacist
grimaced a bit when I talked to him about methadone etc. Perhaps I will have to
lean on my doctor if the going gets really rough. He seems to have lots of experience with WED.
Parkinsons and WED are his specialty. He is easy to talk to and explains things fully. I should ask
him why he is not keener on opioids.

I find this true almost everywhere. I've had many doctors refuse to treat me (I've called to ask if they will treat someone who uses opioids). I've had three doctors refuse to continue treating me after starting out doing so. There is a huge backlash going on against opioids because of deaths and abuse. Some doctors feel the problems outweigh the benefits. Some feel that opioids are only appropriate for surgical pain and death/dying. If you do a search on it, you'll find a LOT of rhetoric about it from doctors, families of those who've died, patients, etc. For about five to ten years, it's been getting progressively harder for all of us.

[peanut1]

Ann,
yes, most of the doctors i see are terrified about the opioids. I wonder if that is why the methodone won't work for me because the doc is too afraid to up the dosage.

Ruthsmith,
Curious to know what Dr. Ondo says. I have an appointment with him in April. I know horizant makes me very ill, but I do take it if NOTHING else is working. I've been on gabapentin, but got ill after upping the dosage. I'm wondering if that is something I just need to ride through and it clears out later. Also curious to know what you are taking in the interim.

[Rustsmith]

peanut1, yes it will be interesting to see what Dr Ondo says for you. Since Horizant did not provide any benefit for me over gabapentin, I am back on gabapentin. He upped my nightly dose to 1200mg. It has only been a week, but I do not thing that I am seeing any real benefit. It allows me to go to sleep, but I still wake up at 3 to 4 AM. I will probably email him again next week to find out what he wants to do. Since Neupro is still working effectively the urge to move side of my WED (most of the time), maybe he will just go with a sleeping pill such as Lunesta to allow me to get more sleep.

[Rustsmith]

Yet another update on my treatment with 2mg Neupro and 1200mg gabapentin.

After nine months of using 2mg Neopro patches with almost 100% control of my urge-to-move WED symptoms, last Friday evening it was like a lightswitch was turned off and the Neupro stopped working at bedtime. I had to get up and take a scalding hot shower to get my legs to relax enough for me to get to sleep. And of course this had to occur on Friday night so that I could not contact the doctor's office until Monday.

The next several nights were virtually the same. My urge-to-move symptoms were almost as bad as before I started any form of treatment. So was the augmentation or a natural progression where my WED suddenly overwhelmed the Neupro? Augmentation usually sneaks up you with a gradual progression, not the off-on situation that I experienced.

When I was able to get through to Dr. Ondo's office, he sent in a prescription to increase my Neupro from 2 mg to 3. At this point, only time will tell whether the increased dosage will work -- and for how long?

[Orrel]

Rustsmith: I am having a similar experience with 2 mg Neupro using Lyrica as the second drug.
See my April 1 posting under Getting Off Mirapex. I am wondering if I'm augmenting on Neupro
or I need a 3mg. patch. I only started the patch on Nov.23, 2014. Did Dr. Ondo think that you
were augmenting or just needed an increased dosage to handle a progression of WED.

[Polar Bear]

Augmentation or Progression - it's like an eternal question - a dilemma we all want to avoid.
So sorry the light switched. Weird how this happens so suddenly.

[Rustsmith]

Orrel, I had seen your note about Getting Off Mirapex. I decided to post in this thread since it has my previous history and also because I did not want to highjack your thread. I am glad you saw this.

As for what Dr Ondo thinks about my situation, I do not know. We handled this entirely by email because I saw him just a couple of months ago. He knows that I want to postpone a move to an opiate as long as possible. But my reason for doing that is not a medical issue. I run competitively and am subject to random testing (although it is highly unlikely I would ever get selected). All opiates except for tramadol are on the USADA's banned list. So if I got caught using one of the ones on the list, I would potentially be banned for life.

[dgarmaise]

Hi. I read this entire thread just now because I am thinking of giving the Neupro patch another go. I tried it about 15 months ago. I found that it worked well initially, but after a while it was less effective. I also found the need to refrigerate the patches a hassle, particularly when travelling. Someone mentioned in another thread that he had heard that it may not be necessary to refrigerate the patches anymore. Does anyone know? Regular participants in this forum will recall previous postings where I explained that the RLS "experts" in Thailand, where I live, all seem to come from a school that believes that if the dose of a drug is not controlling the symptoms, just up the dose until the symptoms are under control. I resisted this philosophy and even tried to get myself off of the pramipexole with the help of some morphine, which is the only opiate I could get (and which, In Thailand I was lucky to get). I had a terrible time with that; I did not take to the morphine at all. I eventually abandoned the attempt and allowed myself to be talked into higher and higher doses of pramipexole. Along the way, I tried several of the anti-convulsants and couldn't abide the side effects. When I tried Neupro, I think I had been up to about 0.75 mg of pramipexole daily. When I started the Neupro, I stopped the pramipexole cold turkey, on the advice of my doctor. I don't remember experiencing any bad effects from that, which is strange give all the postings on this thread. I believe that I started at 4 mg of Neupro which, I know, is already considered to be above the maximum recommended daily dose for WED. Anyhow, it wasn't enough, and I found myself going up to 6mg and then 8mg. I know this is crazy, but I did not have a lot of options, and my doctors were not concerned about these higher doses. I switched back to pramipexole; I don't recall all of the reasons why. About six months ago, I switched to the ER version of pramipexole. I am taking 0.75 mg. (I also take 100 mg of tramadol daily, in two doses. Recenrly, I lowered the dose to 50mg because I was experiencing nausea.) For the last two weeks, I have been experiencing some nausea again and –- this is new for me -– moderate to severe dizziness. The dizziness seems to hit about 1 or 1 am; it wakes me up and I feel I have to get up, at which point I can find no comfortable position. I have to sort of walk it off, holding on to the arms of chairs and the edges of tables until I feel I can lie down again. I also have a strong compulsion to eat when this happens, but that's another long story. Remnants of the dizziness often continue into the following day. Articles on the internet list nausea and dizziness as side effects for both regular pramipexole and pramipexole ER. But I have been taking pramipexole for years without experiencing these side effects. Is there some reason the effects would start to show after six months on the ER version? My doctor here in Pattaya has left her practice. I had been seeing another neuro in Bangkok, but she also moved away about a year ago. So I am back to Square One in terms of doctors. My Pattaya doctor recommended someone, whom I may consult, but he works only part time, and I am not sure I can see him this week. I can see another neuro I know and get some Neupro. I am very tempted to do that rather than wait until I can see the new doctor, especially since I don't even know how experienced he is with WED. On the other hand, I know it is probably best to see what the new doctor says. Sorry for the rambling post... I mainly wanted to find out about the refrigeration issue, I am planning a trip to Canada this summer, and will be traveling a lot by car. Keeping the patches refrigerated at all times will take some work.

[Rustsmith]

You will need to confirm this information for the Neupro patches that are available in Thailand, but patches in the US and Europe no longer require refrigeration.

There was a problem with the patches when they first came out where the medication would crystallize on the surface of the patch. The manufacturer recommended refrigeration up to the point of application in order to slow or stop this process. I do not know if this was done everywhere, but in the US, Neupro was withdrawn from the market, reformulated and then re-introduced in 2013. I was able to find a press release from UCB announcing the product change in the UK and Ireland at that time as well.

I just checked a box of my patches and the box indicates that the patches are to be stored at 25C. So, you probably do not need to refrigerate them, but you should check the directions on the box before you draw that final conclusion.

[Orrel]

David: You mentioned experiencing moderate to severe dizziness from taking pramipexole ER.
I experience lightheadedness taking Neupro 2 mg, something I did not experience when taking
.5 mg of ordinary pramipexole. I put the patch on at 9 p.m. every evening.
I experience the lightheadedness shortly after taking my blood pressure pills in the morning and
it can last several hours, sometimes into the afternoon. I wonder if the longer acting nature of
pramipexole ER and Neupro serves to lower blood pressure too much. I do feel pretty spacey at times.
I don't remember this happening until I had been on the patch for several weeks. Perhaps others have
had a similar experience and can shed some light on this.

Larry

[dgarmaise]

It is weird, I think. I was on the pramipexole ER for five or six months. My blood pressure was fine throughout this period. It is only in the last two weeks that I experienced the dizziness. I thought something else could be causing the dizziness. I had my ears cleaned, something I do about once a year anyhow. The ear doctor didn't see anything in my ears that might cause the dizziness. But he made an appointment for me with an expert in vertigo. That appointment is not until next week. But I figured out that the dizziness had to be coming from the pramipexole ER because of the timing. I was taking the pills around 6 pm every day. An hour or two later, my legs would start to act up; sometimes I felt some nausea; I felt some mild dizziness; I would go to bed around 9 pm; I would wake up around 1 am feeling very dizzy. The pattern was the same every night. I can't see the new neurologist in Pattaya that was recommended to me until next week. There was no way I wanted to go through the dizziness for another week, so I took matters into my own hands. I happen to have some Neupro patches left over from the last time I tried them. I checked the expiry date; they expired in March 2015, so I figured they were probably still okay. So, Wednesday morning at about 9 am, I put on a 4mg patch. At 6 pm, I took .25mg of regular pramipexole. I did not take any of the pramipezole ER. I started feeling better by 7 or 8 pm. I went to bed. It is now 4:45 am on Thursday (we are 11 hours ahead of New York time). I have slept most of the time since I went to bed at 9 pm. It's been a blessed sleep. The dizziness is completely gone. This is just Day 1, so I will have to see if it continues this way. Hopefully, I can continue the patch and soon drop the pramipexole completely. Then, I'll see what I can do about the fact that 4mg of Neupro is still too high a dose. (By the way, in case you are wondering, there are many things about the Thai medical system that I don't like, but we are blessed in one sense: I can make an appointment with almost any specialist and see him almost immediately. Having to wait a whole week to see a specialist is actually quite unusual. I was told that the new neurologist I want to see had an accident and that is why I can't see him this week.)

[Rustsmith]

Update to my situation - I have now been on Neupro for 15 months. I was able to stay at 2mg for 9 months. I was then at 3mg for 2 months and have now been on 4mg for almost 4 months. The 4mg dose is larger than is normally recommended for RLS, but my doctor wanted me to try it in hope of avoiding the next step.

Well, I started showing the first signs of augmentation about two months ago (half way through my time on 4mg). I am now pretty firmly in the grips with moderate to severe symptoms 9 out of the last 12 days with some of the problems just as severe as before I started any DAs. Some days the symptoms start at 5A (I am usually up at 2 to 3A). A normal augmentation diagnosis protocol is difficult for me because I met most of the criteria prior to taking my first DA. But the current situation now is no longer acceptable and has the potential continuing to get much worse.

I have not been able to contact my doctor for the last two months due to work issues on his end (he changed employment and his old employer apparently banned him for contacting his patients during his 60 day notice period). I only have one more week to wait now. So the question is going to be which direction he decides to take my treatment. Obviously I have to get off DAs as Neupro was my second one to augment on. Switching to an alpha-2-delta isn't an option because I am already taking near the max dose of gabapentin along with the Neupro and Horizant didn't work any better than gabapentin. I just hope that he is not in Dr Early's camp of doing drug holidays to get off of DAs because there is far too much going on right now in my life to be able to spend a week or more "off line" from life. Between a trip to Ohio to visit with my university students and teach a course to arrangements for my move to Colorado in November, I will not have the time available until almost Christmas.

But with all that said, I continue to run and to compete. My racing has been going well in spite of (or maybe partly because of) my RLS. I have a difficult 10 mile race next weekend just prior to going to see the doctor, so at least that part of my life continues on.